Tuesday, December 1, 2015

A Cup of Joe

     I had another seizure in my kitchen this morning. Nothing major..I was thinking about first grade again and there I went, back to Henry Siler Elementary School. So, I put the kettle of boiling water back on the stove, walked over to the couch and did my thing...staring into space until it was over.
     I feel 100 times better than I yesterday.
    That's how it seems to work. There hasn't been time to think about the Reset Effect yet. (Now, the earliest I can get my driver's license back is June 1.)
     Reality will sink in, but I'm enjoying the afterglow of "going there and coming back" again. In other words, reality is out of reach for me at the moment, and I don't mind at all.
     The rain outside doesn't bother me the way it did yesterday.
     Life is fluorescent.
     My wings are back.
     Should I thank or curse my temporal lobe for putting me here?
     I refuse to do either.
     Instead, I'm going to stay on the ride and see where it takes me...with my chemical seat belt on, just in case things get bumpy along the way.

Wednesday, November 25, 2015

Hearing Things

     As I said before, neurologists ask some very unique questions and do bizarre things during exams, such as flashing lights and waving bottles of spices through the air. None of this magic prompts a seizure for me, but it does make it easier to share possible connections that would otherwise seem too weird.
    I'm not sure how to begin this story, so here goes...
    When my mother took me shopping for clothes as a little girl, something pretty strange always happened in a certain part of Belk department store...only the store in our hometown, not the one in Asheboro or Greensboro.
     It only occurred in one area of the store near the stairs, but it happened so often that my mother mentioned it to one of the employees. I didn't do anything weird; I felt it and then told my mother.
     What happened? Well, that's the weird part. It was hard to describe. I felt extremely uncomfortable but not in pain whenever I walked around that part of the store. There was a high-pitched noise inside my ears/head.
     When my mother mentioned it to the sales clerk, she said a few other people had the same complaint, and I was so relieved. That discovery gave me the same feeling as finally having a diagnosis for my "spells." I was relieved that it wasn't all in my head and no one else's.
Superpowers anyone?
     After we talked to her more about it, my mother and I guessed that it might be something electrical, a high-pitched noise being made by the alarm system. Perhaps I was hearing something at a frequency most people couldn't detect?
     I liked that answer because it made me feel like the Bionic Woman.
     No neurologist has ever commented one way or another when I tell my Bionic ear story, so I don't know if they see any connection to my disease or listen to be polite.
     However, I do remember it as the first time I tried to explain something in my head that no one else seemed to understand, something that was only happening to me.


     I'm an instructional assistant at my sons' elementary school here in Springfield. Every weekday, I try to make sixth grade a more positive experience for three boys with autism, and for their classmates, so they can all learn.
     Most days are successful, almost all of them, because it's a really good school.
     Part of my job is to figure out what events "set off" behaviors in my students.
     For example, one of my students gets nervous on windy days, so I keep a close eye on him and the trees outside the classroom windows when it storms. The other students are kind about it and do wonderful little things to help him stay calm.
     When I watch him so carefully on those days, how agitated he is, I wonder what it is about the wind that scares him so much. Does he feel it more somehow or in a different way?
     Does it hurt him the way that one part of that one store hurt me, in a way that is very, very real but no one else can feel but him?
     Is it scary, like the beginning of my seizures, or is it wonderful, like the middle part? Does he run to the window in fear or fascination?
     Most of all, I wonder how he stays calm and sits still in class, usually, when obviously he is feeling something else the rest of us aren't...Something he can't explain to us in words.
     Suddenly, I don't feel so alone any more.


Monday, November 23, 2015

The Syndrome

     Soon after I found out about my flat seahorse, I went to Bethesda to meet with a neuropsychologist at Walter Reed Hospital. His job was to figure out if epilepsy makes me less smart or more crazy..in ways that need to be helped.
     That's something I have tried to keep a close eye on since my diagnosis in 1989. The word epilepsy kept me out of the DSM-III, but I wasn't taking any chances. The rules in that book have changed a lot since then.
     The best information then and now came from books by a neurologist my big sis told me about, Oliver Sacks.
     I started with The Man Who Mistook His Wife for a Hat, then Awakenings and kept going from there. His books make me feel like I have a gift rather than a problem, a chance to experience life in a way no one else can.
Dr. Oliver Sacks (1933-2015)
     I even wrote Dr. Sacks a letter when we lived in Okinawa and my disease was suddenly such a big deal. He took the time to write me back, which elevated him to hero status in my mind. From then on, I imagined myself to be a member of his club of misfits.
     There was another neurologist whose book I didn't find so appealing because it was spooky and less scientific. I read a similar book last summer.
     Both authors use such historical figures as Vincent Van Gogh and Fyodor Dostoevsky to explore the connection between epilepsy, creativity and madness.
     They are particularly fascinated with a syndrome that may or may not exist, depending on whom you ask. Even Wikipedia admits the syndrome isn't fact-based, but still, it's interesting reading. Stories of deviant behavior sell, and there is a lot of wiggle room for writing about famous dead people. (Example: Elvis Presley)
    More doctors and fewer storytellers should explore the topic before the syndrome takes on a life of its own and becomes a new demon to be exorcised/conditioned out of us.
     I spent the weeks leading up to my evaluation wondering how similar I might be to the people described in those less-than-scientific publications. Would my doctor send me across the street to the National Institutes of Health for extensive study to find out just how much of a freak I really am?
    There was only one way to find out...


Saturday, November 21, 2015

Zombie Mom

July 25, 2015

     That's an entry from the seizure tracker app on my phone. Thanks to the new app, I was able to see what my seizures look like from the outside. My first reaction was surprise at how physical the changes are, how different I look.
     How did I manage to fake my way through hundreds of seizures without letting others around me realize I was in the Twilight Zone?
     I must be a fantastic actress, huh?
    The first one I captured was a doozie. I passed out on my front porch swing, and the phone landed face up. So, it shows me fading away, regaining consciousness and then walking into the house.
     I was shocked by how "out of it" I looked, even during the conscious part..Not so much afterward but at the beginning.
     Maybe I will download it and share if I'm ever brave enough and think it will help someone. There are people like me with videos on YouTube, but I'm not there yet and might never be.
     I'm taking baby steps. Last night, I was honest enough to tell a friend, who had never seen me have a seizure before, just as it started. I could've easily faked it, but I didn't.
     It was the same old routine. First I was scared, then I felt wonderful..somewhere else.
     And then, for some reason, I had the strong urge to apologize.
     But why?
     All I did was lie down and zone out for several seconds, but still, I felt that because I had lost control of myself, I had done something wrong and needed to say I was sorry.
     My epilepsy had leaked out for a new person to see.
     What would happen next?

Friday, November 20, 2015

The Beast Within

October 2015

     I'm not in second grade anymore. I'm sitting in a restaurant with my son, Tommy, enjoying dinner with friends before going to a haunted forest in Maryland. It's Friday night, so the  place is crowded.        My radar goes off. There's a bully nearby.
     I zone in on the perpetrator without even thinking about it.
     He's hiding behind the mask of parenthood. It doesn't fool me; I know a bully when I sense one.
     He looms over a child, berating him for some unknown crime. I can't see the child, but I can feel some of his pain, even though my daddy never did that to me.
     I don't know why I feel it so much, but I do. Then, I realize I must do something to stop it.
     Why? Again, I don't know.
     No one around me seems to notice. Is it just me, overreacting?
     No, I can feel the tension in the air. It's there.
     I stop eating and become more aware of my surroundings, noticing where the man sits in relation to me and every detail I can absorb. There are frying pans hanging behind him in the kitchen, just over his head.
     Everyone at our table continues to eat except Tommy. He gives me that, "Please don't DO anything," look.
     The man becomes louder, pulling on the boy's arm as he threatens to take him outside for...?
My not-so-sweet alter ego
     Others around us begin to notice and pretend not to. That's what polite, normal people do in restaurants.
     I, on the other hand, cannot do that. Honest, I can't.
     My heart is already beating so fast I can feel it, and heat rises from my chest up into my cheeks until they begin to burn. I remain calm enough on the outside but inside, I'm preparing for a BIG fight. (Frying pans make fierce weapons.)
     I am Bruce Banner trying NOT to turn into the Hulk. He's a powerful fighter but makes a big mess.
     So, I channel my rage into "the stare" and give it to him dead in the eye. Lucky for me, he is sitting directly across from me, two tables away.
    He looks away and stops the abuse.
    The tension is gone, and the air feels clean again; I pick up my fork. Tommy lets out a sight of relief.
     He gets embarrassed when I turn green in public.


Wednesday, November 18, 2015

Bystanders, you make me sick, too

     My mind keeps going back to the same places over and over again. I don't know if these are the same places it has always gone or whether it has changed over the years.
     However, I am currently more aware of what is happening during the beginning, able to catch glimpses of where I'm going on my way down the rabbit hole.
     I almost always go back to elementary school...kindergarten, first, second and fourth grades. I'm referring here to specific moments in school rather than those years in general.
    Last night, I woke up twice after revisiting second grade.
    It was a bad place.
    My teacher was mean.
    The meanest thing she did on a consistent basis was leave behind the children who hadn't eaten "enough" of the food on their plates:  half of each item.
     Hearty eaters went outside for recess while the rest remained in the lunchroom, crying and fidgeting in shame for all the third, fourth and fifth-graders to see. Most of them were nice and looked the other way, having experienced the same treatment themselves.
     All the other adults must have looked the other way, guilty bystanders.
     I made it out to recess every time except on Spanish rice days, when at least half the class was left behind. That was about every other week; I kept up with it on the calendar.
     On those days, when I sat there squishing the peas and rice and carrots together, I perfected the art of  holding in my emotions when angry, scared and embarrassed in public.
     The secret to surviving, I realized, was to stare at the rice and pretend to be somewhere else until it was all over with.
     What other choice does a child have when all the adults look the other way?
     Endure, learn to fake it and go on.


Tuesday, November 17, 2015

You Make Me Sick

To:      Anyone being paid to promote Epilepsy Awareness Month
From:  Not your biggest fan

     It's time to consider drafting some PR people from the Autism Awareness, Breast Cancer Awareness and most other Awareness campaigns out there.
     There isn't a polite way to say this, so here goes...You're doing a crappy job.
     How do I know this? Someone recently asked me if I could swallow my tongue.
     What should I expect next? An exorcist at my door to release me from the devil's grip??
     Hello! Are you people even awake out there??? Did you take your meds this morning??
     It's 2015.
     We have the Internet now. You can Tweet that myth right out of existence, if you TRY HARD ENOUGH!!!!!
     Today is going to be my "Epileptics Don't Swallow their Tongues Day" on Twitter. Over and over and over and over and over and over and over and over and over and over and over again because you are failing us.
     In case you haven't noticed, I began a Temporal Lobe Epilepsy Awareness Campaign of my own last month because I'm tired of hiding in the closet, of holding it all in.
     I  aced my PR class in college, but it wasn't really my thing. That was before I knew what was going on in my brain. Well, before I knew the name for the disease that takes me places no one can explain.
     Maybe that's because no one cares. Your job is to make people care about epilepsy, period. I don't see you doing much of anything.
     I've been watching very closely, like I always do, when I care.
     You are letting down all the people who think they have a mental rather than neurological disease.      You are letting down the ones who have both and don't know there is a connection. They blame themselves for behaviors that could be explained...They feel guilt and shame.
     You are letting down people who are afraid to leave their houses because no one would understand their odd behavior...why they act different from other people.
     There are many more examples of how you are allowing fear to exist and hurt people when a little bit of education could take it all away.
     Stop letting us down, please.
     Go on Twitter, Instagram, Snapchat, Facebook, Pinterest, YouTube, etc., and clear up this tongue-swallowing confusion once and for all.
     Your lack of effort makes me sick.